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From: Rahnee Patrick & Gary Arnold
Sent: Thursday, June 28, 2007 10:47 AM
Thanks to Ron Mallicoat for passing this along.
Below please find a feature storying about a young girl forced to live in a
Georgia nursing home. The story reflects many of the same long-term care
issues we face in Illinois.
Gary
Babes Among Elders: Nursing-Home Kids
Parents Want Cheaper Home Care, but Medicaid Pays to Institutionalize;
Ronnie's Journey
By CLARE ANSBERRY
June 28, 2007; Page A1
COMMERCE, Ga. -- Ronnie Rivera, a 15-year-old in braided pigtails, sits in a
wheelchair in a narrow hallway of Hill Haven senior-citizen nursing home. A
half-dozen other residents, many with dementia and most four to six decades
older, sit nearby. Around them, a maintenance worker mops the linoleum
floor.
Ronnie has lived in this single-story red-brick building since she was 10
years old, the only child among elders. Her mother, Iris Rivera-Smith, has
tried unsuccessfully for years to get the financial help she would need to
bring her daughter home.
Thousands of other children are growing up in nursing homes across the
country, many for the same reason as Ronnie. Federal disability insurance
guarantees nursing-home care for the disabled. But in many states, its
coverage isn't enough to let those people, children included, live at
home -- even when the cost to taxpayers, and the strain on families, is
often much lower.
Born legally blind, with club feet and cerebral palsy, Ronnie can't walk or
speak. She can't feed or dress herself. But she responds to touch, smells
and sounds, pounding her chest with her right hand and laughing when happy.
Latin music, the outdoors and her mother's voice make her happy.
1
Clare Ansberry
Iris Rivera-Smith kisses her daughter Ronnie.
Until five years ago, Ronnie lived at home and went to school with other
developmentally disabled children. Then she had severe respiratory problems.
Her lungs filled with fluid and she almost died. Doctors told her parents
that Ronnie should go to a nursing home to receive 24-hour care for the few
weeks she was expected to live.
Ronnie outlived expectations and remains here, more than 100 miles from her
home. She doesn't go to school. Her world consists largely of the home's
long corridors, its atrium with a big-screen TV and her room, with its
cinder-block walls painted blue.
About 4,000 children nationwide live in nursing homes, according to
Medicaid -- a small, often hidden population that has wound up in these
incongruous settings, often against their parents' wishes. While some of the
homes cater to children, many are traditional facilities designed for the
aged. Their staff may dote on young residents but are often more familiar
with geriatrics and dementia. Visits to family may be limited: Nursing
facilities often give away residents' beds if they spend more than 10 nights
a year away from the home.
"Any child in a nursing home is so outrageous -- it offends the
sensibilities," says Ruby Moore, executive director of the nonprofit Georgia
Advocacy Office, a federally chartered group that supports the disabled.
But for these families, there is often no alternative. Parents may seek help
after their disabled child suffers a life-threatening emergency, or a
divorce leaves a single working parent without time or resources for child
care. Depending on what institutions are located near the family, a child
may be sent to a group home, a state or private school or, often in the case
of the most severe disabilities, to a nursing home. A total of about 26,400
children are in out-of-home facilities across the country.
Home care isn't an option for many parents. Medicaid, the federal-state
program that insures people with low income or disabilities, automatically
pays for nursing homes. It's up to individual states to decide how much they
will pay for in-home services. Few states fund the level of skilled care
such patients require, leaving parents with a burden that can run tens of
thousands of dollars annually. Nationwide, there also aren't enough
home-care workers, nurses and therapists to serve these families. About
93,000 developmentally disabled Americans of all ages are on waiting lists
for home and community-care services.
When home care is available, it typically costs taxpayers less. Georgia
spends about $81,000 a year for each resident in institutional care, which
includes nursing homes. Home and community care, by comparison, costs about
$26,000 a year, according to the University of Minnesota's Research and
Training Center on Community Living.
Iris Rivera-Smith helps her daughter Ronnie into her wheelchair.
"We simply don't do enough to support families to care for their children
with significant disabilities at home," says Eric Jacobson, executive
director of the Georgia Governor's Council on Developmental Disabilities. To
begin to address the issue, last year Georgia's state legislature committed
$48 million to programs for the disabled, including a plan to move more than
140 institutionalized children, including 87 in nursing homes, back to their
families.
In the meantime, Ms. Rivera-Smith, 46 years old, makes the four-hour round
trip to Hill Haven at least once a month, in between working and caring for
a young grandson. She brings Elmo dolls, dollar-store hair ribbons and
handmade bibs, embroidered with hearts. On Ronnie's birthday, Ms.
Rivera-Smith brought her daughter home to eat chocolate cake with her
cousins and four older siblings. Ronnie wore a new red dress.
The federal Centers for Disease Control and Prevention has called for all
children with disabilities to be out of "congregate settings" -- four or
more people with disabilities -- by 2010. Budgets for home care have grown.
Federal and state spending for home- and community-based services, the bulk
of it through Medicaid, increased to $17.2 billion in fiscal 2005, nearly
tripling the amount spent in 1997. Spending on institutional care over the
same period was up 20%, to $12.1 billion.
"The Bush administration has been very supportive of home-care," says Mary
Kahn, a spokeswoman for the Centers for Medicare & Medicaid Services. "It is
particularly poignant when a young child is involved."
Yet even as home-care spending has increased, the population of
institutionalized children has remained steady in recent years.
In 1977, more than 90,000 developmentally disabled Americans under the age
of 21 lived in congregate care facilities. After a national movement away
from institutional care, the number dropped to 26,000 in 1997, only to edge
up to the current 26,400, according to the University of Minnesota community
living center.
The needs of these children vary. Some have survived a traumatic injury,
such as a near-drowning, and live on a ventilator, responding with their
eyes to touch and sound. Those with severe mental retardation often require
help to dress and eat, but don't require involved medical care. Others have
physical disabilities but a mind that leaves them aware of their setting and
their singularity.
"Compared to the other residents, I was healthier, physically and mentally,"
says Danny Shirey, 26, who has muscular dystrophy and was sent to a
Columbus, Ohio, geriatric nursing facility when he was nine.
In his six years there, he would roam the halls in his electric wheelchair,
help older people play bingo and euchre, or guide disoriented patients to
their rooms. He looked forward to monthly visits from his family, who lived
in Pittsburgh. The facility's occupancy rules made going home for an
overnight visit rare.
"There has to be a better alternative," says Mr. Shirey, who received some
tutoring during his nursing-home stay and has attended school. He now
consults with groups trying to improve options for children with
developmental disabilities. "I was far away from my family. I remember
crying myself to sleep many nights."
On nights when Judy Zifka, 52, is feeling particularly lonely, she will
drive to Providence Child Center in Portland, Ore., and climb into bed with
her 15-year-old daughter, Andrea. They listen to Billy Idol, Dave Matthews
or jazz. Her daughter will sometimes hum, the only sound she makes.
Born seemingly healthy, Andrea Zifka had her first seizure at three months.
Doctors performed an MRI and found her brain lacked the natural folds that
control the ability to speak, chew, move or register emotion by crying or
laughing.
Though profoundly disabled, Andrea wasn't eligible for Medicaid because she
lived at home and her father, an electrician, was earning $35,000 a year,
putting them above Oregon's poverty line. Her father's private insurance
covered hospital stays but wouldn't pay for in-home nursing care, therapists
or all the medical equipment Andrea needed. For those with private
insurance, out-of-pocket expenses for prescriptions, lifts, wheelchairs and
other equipment can run more than $50,000 a year.
By age 9, Andrea had lost all purposeful movement. Ms. Zifka dressed, bathed
and turned her to prevent bed sores. As her energy and sympathy went to
Andrea, her marriage suffered. After carrying her 70-pound daughter up and
down steps, she developed rheumatoid arthritis in her spine.
Her husband, Lance Zifka, worked on construction projects, often out of
town. "I just couldn't guarantee that I would be working close to home and I
could tell she couldn't lift her anymore," he says. "It just wasn't going to
work."
The closest residential option was Providence, three hours away from the
family's home in Bend, Ore. The family had sent Andrea to the nonprofit
facility, one of the nation's 40 pediatric nursing homes, for short-term
care in the summer. When Mr. Zifka heard it had a long-term bed available,
he requested it for Andrea.
"I felt like I totally failed my daughter," says Ms. Zifka. "I'd wake in the
middle of the night, come out in the living room and cry." She visited
Andrea every two weeks from Bend, making the six-hour trip in one day.
After several months, Andrea's seizures began intensifying. "I believe she
was dying of loneliness over there," her mother says. Ms. Zifka rented a
room in Portland so she could spend two weeks a month with her daughter. She
spends the other two weeks with her husband and son. While she's away, Ms.
Zifka asks Providence's staff to play her daughter CDs the Zifkas made. On
them, Andrea can hear her parents reading fairy tales.
Andrea has been there two years. Ms. Zifka says she's glad her daughter is
with her peers, not at a nursing home geared to older people. Andrea goes to
school. Providence's pediatric facility hosts proms and takes the children
to malls and horseback riding. In a recent production of "The Wizard of Oz,"
Andrea was Glinda the Good Witch, pushed across the stage in a chair.
Ms. Zifka says she knew they would eventually need someone to care for
Andrea. She just didn't expect it so soon. "It was wrong that I had to make
the choice that I did," she says. "It was wrong that the only way I could
get help was to send her away."
Medicaid pays Providence Center about $100,000 a year for each child, says
administrator Pat Budo. Average home and community-based spending for
someone such as Andrea, with developmental disabilities and extensive
health-care needs, is about $35,000. "It is crazy," Ms. Budo says. "This
child could be kept at home at much lower costs."
Which services Medicaid covers, and whom it covers, vary by state. The
Centers for Medicare & Medicaid Services pays a percentage of each state's
total costs, often footing a higher share of needier states' bills. States
determine who is eligible for the aid, with some covering only those below
the poverty line and others paying for all residents with certain
disabilities.
This year, Oregon passed legislation to allow all severely disabled children
living at home to get Medicaid coverage, regardless of family income. It
would also help the 83 children currently in the state's nursing homes, such
as Andrea Zifka, to move home. The new policy begins Jan. 1.
It is an involved process. Agencies must line up nursing care, therapy and
schooling. Homes may need wheelchair ramps or hoists to lift children out of
bed. And there are other, more delicate issues. Parents may be reluctant to
relinquish the safety net of 24-hour-paid care. Some argue that certain
children are so medically fragile that there will always be a need for
institutional care.
Laurie Faulk never wanted her son in a nursing home, but didn't know she had
a choice.
Donald, 14 years old, is legally blind and has mental retardation. Cerebral
palsy keeps him from walking. He is fed by a tube and can't dress or bathe
himself.
Until he was 6, Donald lived with his parents in their rural Georgia home.
Ms. Faulk took him to doctors, exercised his legs and taught him to say
words like "love," "good" and "up." But that year, she and Donald's father
divorced. With no job, Ms. Faulk moved with her son to a small trailer,
where she washed clothes in the bathtub.
At one point, when her ex-husband was caring for Donald for a few days, Ms.
Faulk was arrested for driving under the influence and ended up in jail, she
says. Donald's father gained custody and, at age 6, the boy ended up in a
geriatric nursing home, the only child among some 100 residents. A paper
sign on his door, decorated with teddy bears, read "The Baby's Room."
Donald's father didn't return calls seeking comment.
Ms. Faulk visited weekly, decorating his room with bunnies for Easter and
Santa Claus for Christmas. She would take him outside to listen to the
birds, wheeling him down the hallway past older residents who sat in their
doorways, television sets blaring. "In there, all he heard was people
moaning and groaning," Ms. Faulk says.
Donald spent most of his six years there in bed, his mother says, lying on
his side and facing the wall. His spine curved and his hands grew stiff and
curled. He developed blisters and bed sores and was hospitalized several
times because of problems relating to his feeding tube, she says. "I was
always sad and angry," she says. "He would stink and smell so bad I had to
wash him so I could even kiss him."
Gillian Grable, project director for Georgia Advocacy Office, a nonprofit
group that was helping track down children in the state's institutions, came
across Donald. The office was working with other state agencies on the
Children's Freedom Initiative, one element of Georgia's plan to provide new
services for people with disabilities.
Ms. Grable called Ms. Faulk and asked if she wanted her son back home. With
the agency's help, Ms. Faulk found an attorney who helped her gain custody
of Donald. By then, she had a job, repainting walls and cleaning rental
properties, and was sharing a house with a friend.
Donald came home in February 2006. Medicaid money, which once went to the
nursing home, pays to have someone stay with Donald from 9:30 a.m. to 5
p.m., while Ms. Faulk works. It also paid for a bath chair, hospital bed and
suction machine that keeps his breathing tube clear. Speech and occupational
therapists, as well as a special-education teacher, come several times a
week.
Donald's once-stiff hands can now hold a ball and rag doll. Their
refrigerator displays his art, the latest being a cherry tree with blossoms
of pink-tinted popcorn, which he made with the help of his teacher. Donald's
dark curls, shorn at the nursing home to avoid matting, have grown in.
Having him home is comforting. "He wakes up and I hear him laugh and talk,"
Ms. Faulk says. "I don't have to worry about him."
Ms. Rivera-Smith is working with the state advocacy office to bring her
daughter home as well.
For now, Ronnie spends a portion of her day in the doorway of her room,
right across from the nurse's station. Staffers wheel her to the atrium for
performances by local church choirs and activities like line dancing,
musical chairs and a pirate party where able residents swung at a piqata.
Ronnie can hear the music and laughter, which is all part of sensory
stimulation, says Dana Carey, administrator of Hill Haven.
"There's not a lot you can do for Ronnie. We rub lotion on her, do her
hair," says Ms. Carey. "We do a lot of passive participation, where she sits
in the hallway with the radio on."
When she comes to visit, Ms. Rivera-Smith takes Ronnie for walks. On a
recent outing to a shopping center, she pushed Ronnie's wheelchair and
described a lace dress in a window. "Oh baby, I love this. That would look
good on you," she said. They dropped into Bath & Body Works to smell
Moonlight Path, their favorite fragrance.
Before leaving Ronnie at the nursing home, her mother climbed into bed next
to her, whispered in her ear and gave her a kiss goodbye.
After, she walked down the hallway, past the atrium where a half dozen older
residents were watching "The Price is Right." She stopped to rub the arm of
a white-haired woman resting in a reclining chair. The woman had been
Ronnie's first roommate until she became too frail. Ms. Rivera-Smith punched
a code to open the locked doors, and stepped outside.
Write to Clare Ansberry at [EMAIL PROTECTED]
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